Baby Abigail

Post Fontan

2013-08-06T19:09:00.000-05:00

Abigail surgery was finished around 1 pm. Met with her surgeon Dr Heinle around 1:15. He said everything went as expected, no complications noted during surgery. At that time she was waking up from anesthesia. They took her to CVICU and got her stabilized and and connected to all of her medications. I think she is hooked up to 5 different IV infusions. She has an IV in her hand and one in her neck, an arterial line in her wrist, incision from surgery, 3 chest tubes draing blood/fluid, a foley catheter to drain urine, ekg leads on her chest, some monitor on her forehead, thermometer reading 'rectal' temp, pulse oximeter on her finger, nasal cannula for oxygen, and pacing wires. A lot for a 4 year old. Hopefully little by little we will rid these monitors and tubes. She is still very sleepy , wakes up occasionally and seems disoriented, grumpy and uncomfortable. First asking for water or chocolate milk. She is on a fluid restriction at this time. so far we have had ice chips an few times that she has tolerated and enjoyed. They are keeping her pain under control. So far so good. will keep posted

fontan update

2013-08-06T11:44:00.004-05:00

Abigail has been doing great with all her updates this morning. After anesthesia and placing lines they took their time going through the sternum. scar tissue accumulates from previous surgeries, they take their time going through that area, careful not knick the heart in the process. Last update about 1130: she is on heart-lung machine, doing well. Dr Hienle is finishing the actual Fontan procedure. When that is complete they will start closing her up. Once she is is done they spend 1-2 hours getting her settled in ICU before we will be able to see her. The prayers are working, keep them coming!

Fontan Surgery- surgery day

2013-08-06T08:07:00.000-05:00

Well its been almost 4 years since I've made an entry to this blog about Abigail. In my mind that is a good thing. I started it up when she was born to keep everyone up to date during her hospital stays and surgeries. Thankfully, she has been out of the hospital for almost 4 years. So we have been living the life of a normal child and thankfully have had nothing to updat

e on. Well, unfortunately today is the dreaded day. The 3rd of the three surgeries planned for her since before birth. Just to backtrack a little. Abigail was diagnosed with Hypoplastic Right Heart (her right ventricle never really developed, so must functions with 3 chambers)and also Pulmonary Atresia (a congenital malformation of the pulmonary valve in which the valve orifice fails to develop. the valve is completely closed thereby obstructing the outflow of blood from the heart to the lungs). BT shunt (1st surgery) done at 2 wks of age. Glenn Shunt (2nd surgery) done at 5 months. So we have dreaded this day, but in the end I guess it has to be done. Abigail has been in good spirits about "the hospital". We have a prize box,shopped for snacks, games, toys and entertainment. talked about visitors, even visited another heart friend on the cardiology floor to orient her to upcoming scenario. We arrived at hospital at 0600 this AM. she was in good spirits, wanting to play and watch TV until the dreaded oral versed, which probably has ruined the whole hospital experience. She threw it up , and cried about the taste. Right at 0700 she willingly let the anesthesiologist walk her back to the OR. I cried my eyes out. It is the hardest thing to do to. No child deserves to be put in this situation. Please keep praying that she surgery will go well without complications. she will wake up from anesthesia, and be on the road to a quick recovery. Will continue to post updates as i get them

Abigails Home

2009-09-29T09:10:00.003-05:00

Sorry a little late on this post, but Abigail cam home last Monday the 21st. We are so glad to have our whole family home. Things are going pretty good, incision healing. Still struggling with her eating, thats really been our only issue since coming home... but hey, isn't that always her issue. She went to peidatrician yesterday to just check in, nothing to report. She was supposed to have a cardiology appt today, but since she is doing well and their schedule is too full, they have moved it to next week.
So life still remains busy... two working parents, juggling Abigail from one "sitter" to the next, a 2 yr old, making bottles, giving meds twice a day, little sleep, feeding during the night and all the normal things of a household! Trying to get through each day is a challenge in its self! But hey, thats life right!! We are hanging in there!

2009-09-19T21:13:00.005-05:00

Abigail is doing GREAT! Today they took out her NG tube and IV, so she no longer has any tubes going in her anymore!! She is eating well, smiling again, and seems to be comfortable. She had a few couple of really bad days (Wednesday and Thursday- probably the worst of them all), but I am so relieved to say we are over that hump. The only problem is that her hair is falling out, like in chunks. I have heard that anesthesia can cause hair loss and have heard that it can just be stress from the surgery. Either way... poor baby girl is balding! Thank goodness for hair bows!!

The doctors rounded today and said they are pleased with her progress. She will have an ECHO of her heart on Monday, and if all checks out then they will let her go home!! Woo Hoo!!

I am so thrilled to be able to update with such great news. We are looking forward to going home. Aunt Patsy hasn't left Abigails room since she arrived on Wednesday. She has been a great help during these difficult times.

I can't thank you all enough for the support and prayers sent our way these last 5 months. It is so great to know I have such a large extended family.

We've graduated...

2009-09-15T22:02:00.010-05:00

Yes... we moved from CVICU down to the 15th Cardiology floor. Yeah!! Abigail is doing good. She seems very depressed and sad. My heart hurts for hers. She has been through so much in such a short 5 month period. She has had 100's of sticks, 4 PICC lines, 2 heart surgeries (1 was open heart and she was on bypass), 3 chest tubes, probably 10 echos, 20 xrays, about 250 shots in legs and arms from Lovenox shots, NG tubes........and so on. She has spent 110 days in hospital, and only 49 at home. Most of us will never experience this much in our entire lives!
I am enjoying being back on 15, one step forward to home. We have our own room, I have my own bed and bathroom.... unlike in CVICU there is only a chair, not a recliner or anything with cushions, just a chair. I am enjoying being able to hold her again. She seems to be resting peacefully in my arms right now. I hope that we will both sleep well tonight.
We are looking forward to the arrival of great Aunt Patsy from Washington state tomorrow. She is coming to visit and help us out for about 11 days

Day 4 after surgery...

2009-09-15T12:27:00.009-05:00

Abigail is doing great! She is much more alert and awake today, although she does seem sad.... I'm sure she is just uncomfortable, or maybe she just misses dressing up with cute clothes and big bows, or just upset all her hair is falling out (IDK why). They say that they suspect after the Glenn surgery that the babies suffer headaches for first couple of days due to change in blood flow. They are now giving her scheduled Toradol for pain, and Morphine as needed. Everything has gone well with extubation/ and breathing on her own. They have removed most of her tubes/lines/catheters. They plan to remove her LA line going into her heart sometime later today. Once that line is out she will only be left with one IV going into her right femoral area and we will finally get to hold her again! I can't wait and I'm sure she could use a little more luvin' on. We also expect to be moved back to the Cardiology floor (15) once that line is out. Her incision looks good, her vitals are stable. We are right on track now! Yeah!!!.... finally. What a strong little girl!

The ENT doc came by yesterday afternoon. They looked at vocal cords. Said that the right vocal cord moving well, and the left vocal cord is moving slightly. She doesn't expect any permanent damage. Will heal with time. And she gave her the OK to start trying to feed by mouth. Still not much sound coming out when she tries to cry, but she will get there.

Our family thanks everyone for all the prayers and love for Abigail!!

Making Progress....

2009-09-14T10:28:00.006-05:00

So happy to have some positives to write about. Woo Hoo!
So they took both of her chest tubes out today which is good. Her AM chest xray was good after removing them. Removed her pacing wires from chest. And they just extubated (removed breathing tube) her about 10:10 am. She seems to be resting comfortably, shows no signs of distress or difficulty breathing at this time. She does have a little nasal cannula delivering supplemental O2 through her nose. Her oxygen saturations at at 89% right now. They plan to remove the central line in her neck today. Her urine output is good (getting lasix 3x day). Blood pressures a little high (getting Enalapril 2x day and PRN Hydralazine). They plan to have ENT doc evaluate her today or tomorrow re: vocal cord damage. I suspect there will be damage. They say "ususally" it is temporary. Lets hope for that!!

Well, I am just glad to be reporting some good news and we are taking steps forward towards recovery! Keep praying for my sweet Angel!!

2nd day Post-OP

2009-09-13T09:16:00.009-05:00

.... Well after 12 hours yesterday of deep retractions, labored/ difficulty breathing, attempt at CPAP, many respiratory treatments, chest percussion therapy, steriods... and so on... They finally decided to reintubate her. (Put the breathing tube back in to breathe for her). Poor Abigail, I watched her work very hard all day at breathing. They "think" difficulty is due to swelling from intubation. So plan now is to keep her intubated, probably till tomorrow AM, give steroids to reduce swelling, and keep her sedated. They have been giving her BP meds, pain meds, antibiotics, steroids, sedatives, diuretics... and probably some more that I haven't listed. There is 9 IV infusion pumps going right now... some are keeping the many lines into her open.... but 9, OMG!
Abigail woke up yesterday evening for about 5 min. She was looking around, responding to voices, grasping my finger... the highlight of my day...until they gave her more drugs to sedate her.
One of my big concerns is her vocal cords/ nerves...possible damage cause from surgery. She has not cried, moaned, made any noises since surgery. The docs say this is always a possibility, usually damage is temporary. They will have an evaluation done by an ENT. They look at vocal cords and swallowing abilities. Oh, what I would do to hear her cry right now.
I guess that sums it up for now.... keep her in your prayers!

AM update- post surgery

2009-09-12T11:36:00.006-05:00

So Abigail had a good night. I had a friend, Angela (mother of another HRHS kid), offer to stay night with her so we could get a good nights rest at home. We thank her so much for doing this, she is a great supporter and very knowledgeable of whats going on. She sat at her bedside throughout the night. Abigail was extubated (breathing tube removed) this AM, so now breathing on her own with a little O2 going into her nose. She is having some labored (difficulty) breathing (retractions). Her chest xray was good, suspect that just some swelling from breathing tube. She has been given breathing treatments and steriods to decrease any swelling. They are medicating her well with morphine and versed to keep her comfortable, she has had her eyes closed most of the AM. She does move her arms and legs a little, seems a little restless. Her platelets have increased (in the 200s).Her face is a little puffy, which is expected. They have now decided to try her on CPAP to assist her with breathing, to try to decrease the work she is having to do on her own. CPAP (Continuous Positive Airway Pressure) just "assists" her, forces extra O2 into her lungs.

Abigail's 2nd Surgery completed!

2009-09-11T18:34:00.006-05:00

We are in CVICU now with Abigail. The surgery was done about 4pm. She is stable, but still very sedated. Dr. Heinle did Abigail's surgery today. They were able to place her new shunt (Glenn Shunt), remove her old shunt (BT shunt), and open her PFO
(patent foramen ovale)-allowing blood to flow from the right atrium to the left atrium (before there was restricted blood flow between the two, allowing too much blood to back up into body). No complications during surgery. She has many tubes hooked up to her right now.... I will give a quick rundown (best I can)
1. NG tube (feeding tube)
2. ET tube (endotracheal tube) down her nose for breathing
3. Central Line (right side of neck)- measuring pulmonary arterial pressure
4. 2 chest tubes
5. pacing wires (if needed)
6. L wrist arterial line (measure blood pressure)
7. L atrial line coming from incision site area (left atrial pressure)
8. IV in left foot
9. foley cath
10. pulse oximeter
11. Right femoral central line
12. Temperature probes (rectal/ and on skin)

Meds: Nitroglycerin, Albumin, Morphine, Ancef, Milrinone.
Her PLT (platelets) are a little low =76... about to infuse some Platelets.
They plan for her to be in CVICU for 2-5 days. Hope for her to be extubated in next 1-2 days.

Thats about it for now, I guess. Thank you all for your thoughts and prayers, but please keep them coming.

Today, Surgery....

2009-09-11T13:49:00.004-05:00

Well they took her back at 0830. They anticipated 1st hour to be just getting all the appropriate lines (IV's, etc) and anesthesia started. They came with the 1st report around 1030. They said all the line access needed had been established, and things well with anesth. That the incision down her chest had just been made. They anticipate that the actually surgery from incision point will be 5-7 hours. They will intend to do the Glenn Shunt and remove the old BT shunt. These 2 things I know for sure. There will be many other decisions/ possible procedures made once they are inside and are able to evaluate the heart up close.
The 2nd update was around 1245. They stated she was on bypass machine, things going smoothly. That the doctor was doing a muscle resection of the right ventricle (" due to overgrowth").... don't ask what that means.... cause I really don't know what that is all about.
Basically the "charge nurse" must go from room to room trying to get and idea of what is going on. She is the one who comes to us with a report. Really not knowing much more than the basics. So not a great resource person for any questions.

thats about it for now. Lots of family here for support and I know there are many of you out there praying for our girl. Thanks .... will keep you updated

Surgery on for Tomorrow!

2009-09-10T20:49:00.002-05:00

Surgery is set for tomorrow, September 11th. Once again they kind of sprung this on us today, last minute kind of thing. Surgery is expected to last 6 hours long. They usually give us hourly updates so if anyone out there is reading I will try to update. Please say a prayer that everything will go smoothly, no complications, and she will come out stronger!!

No surgery today

2009-09-08T09:34:00.003-05:00

Well as we thought might happen, the surgery is off for today. The kid that was originally scheduled today went on with his/her surgery. We are still scheduled for Monday the 14th. Once again, if a pot becomes available before then she could go sooner. There is always a chance she will get bumped for whatever reason on Monday. We will keep you all posted

Eve of the Glenn or Worry for Nothing

2009-09-07T19:34:00.004-05:00

Tonight we anxiously await what tomorrow morning may bring. The child who is scheduled for the first surgery tomorrow morning has been ill, so if he is not in shape for surgery, Abigail will have her Glenn procedure. The Glenn, as you may or may not remember, is the second in a series of three opereations to get blood to Abigail's lungs. If the other kid is well, we will have spent all night preparing for nothing. So it goes with all of this. Hurry up and wait. Please keep Abigail in your thoughts and prayers tomorrow. It maybe a very big day for her. Thanks for all your support.

2009-08-30T23:11:00.004-05:00

Surgery scheduled for 9/17

2009-08-29T16:00:00.010-05:00

Picture of HRHS (Hypoplastic Right Heart) with Pulmonary Atresia

(Abigail's heart condition)

Picture of the Glenn Shunt Procedure

Well we received the news yesterday that they would rather do her next surgery (the Glenn Shunt) sooner than later. So the BIG day is planned for Sept 17th. As they have told us many times before, nothing is set in stone.... if for some reason it becomes more urgent they will do it sooner. Or if something more urgent comes up for someone else she could get bumped. They have also talked about enlarging some valve (not sure which one, cause they really haven't said) with the next surgery also. They think too much blood is accumulating in the right atrium and it is kind of backing up, too much blood flow to the liver and bowel. They think that this affecting her appetite which= her poor eating habits and difficulty gaining weight. They placed a NG (nasogastric/ feeding tube) down her nose last night. Anything she doesnt eat by the bottle will go down that. Hoping to "bulk" her up before surgery. I guess that means for 3 wks... and she has already pulled it out once. But doing well in hospital. Gained weight today, yeah!

Just a copy and paste of the Glenn Shunt Proceure (which is done open heart) and description of HRHS....ope this helps explain stuff.

Glenn shunt: A surgical operation for children born with cyanotic heart disease ("blue babies"), in which a large vein (the superior vena cava) is anastomosed (connected) to the right pulmonary artery so that blood bypasses the malformed right chambers of the heart and is shunted directly into the lungs to be oxygenated.

What is hypoplastic right heart syndrome (HRHS)?

Hypoplastic Right Heart Syndrome (HRHS) is a condition that is even more rare than Hypoplastic Left Heart Syndrome (HLHS). HRHS refers to the underdevelopment of the right side structures of the heart, which means that the chambers, valves and related blood vessels on the right side of the heart are malformed. This malformation involves the pulmonary valve atresia which has not formed, a very small right ventricle, a small tricuspid valve and a small hypoplastic pulmonary artery. As the ventricle has failed to grow and develop the ventricles muscle structure is poor, so additional problems are encountered as the heart attempts to pump blood to the pulmonary valve for transfer to the lungs. The proper amount of blood pumped from the right atrium is not sufficient and this causes the blood to be not pumped efficiently to the lungs.

Main Problem:
Pulmonary valve atresia which is absent is a valve that normally opens and closes to let blood flow to the pulmonary artery.

Secondary Problems
A very small (hypoplastic) right ventricle is the lower chamber which normally pumps blood to the lungs,
A small tricuspid valve which is the valve that allows blood to flow into the right ventricle
A small (hypoplastic) pulmonary artery.
The blood flow into the coronary arteries may be abnormal causing damage to the heart muscle

Post Cardiac Cath/ Hospitalization

2009-08-27T16:31:00.007-05:00

Just thought I would update you all on Abigail's status.
So, Abigails cardiac catherization went great. Dr. Matthew Crystal was her interventional cardiologist. He became our hero. In the previous cath they had seen that her Right coronary arterty was closed off, not making the connection needed to supply blood flow to her heart muscle. Increasing her risk of sudden complications. During the cath on Thursday, August 20th, Dr. Crystal said that her right coronary artery is open and the connection is made to her heart. That is WONDERFUL news!! It was unexpected news, but we were excited to get it. Otherwise they did not report that there were any other new changes or problems with the heart. We did have to stay over night, but was discharged home on Friday AM.

Abigail remained very sleepy throughout the day on Friday from the anesthesia. Saturday she became extra fussy and was not eating well. I called Cardiology to report this, they requested us to go to the ER at TCH. So we spent about 5 hours for Abigail to poop, eat, and get an EKG before we were discharged home.

The next couple of days she continued to be a poor eater, she was losing weight, and continued being fussy. We were sent back to the ER on Tuesday afternoon to be re-admitted back to the cardiology floor, where we are at this time.

So, the update since arrival....
Had a cardiac echocardiogram on Wed...- they say no significant changes noted, which is a good thing.
All the lab work they have done has been fine.
After talking to the docs today in rounds, they are concerned with her poor feeding and weight loss, really having no explanation to why. They said they will give her through the weekend to improve before trying more extraordinary methods . They did mention nasogastric tube (NG tube through nose) for feeds possibly if she doesn't get better. Trust me, that I will fight against that one. But the goal in mind.... gain weight, be a chunky little girl for her next surgery, to which they seem to think the bigger, the better, the healthier= better recovery. I anticipate the next surery in the next month, maybe two.

I do think she is eating better since admission and is less fussy, overall very happy. She has lost weight in the last week.

Abigail did have an ultrasound of her blood clot last week. I met with the hematologists today. After 4 months of twice a day Lovenox shots.... there is no change or decrease in the clot. So the plan with that.... stop the Lovenox. I'm so glad Abigail will no longer have to go thru the shots everyday. She will just probably always have the clot. They will continue to follow her care.

So thats about it for now. I will try to keep you all updated since we are stuck back in this prison.

Cardiac Cath Tomorrow

2009-08-19T14:46:00.005-05:00

Things are going good for us at home right now... been home for 3 weeks now! Yeah!! Abigail is eating better, gaining weight (11 lbs 6 oz).

Today she had a follow up ultrasound for her blood clot, no news on that yet. Have appt next week for results, along with the FEARED lovenox level. I expect the blood clot to still be there. There is a chance it will never go away.

TOMORROW... another BIG day for Abigail. She is having her 2nd Cardiac Cath done. This is required before the 2nd surgery. I think they measure the pressures in the heart and just look at the anatomy of the heart to be well prepared for surgery #2. Still no plans for that at this point, don't really know what will be the deciding factor. The bigger she is the better, so a few more months at home would be great!!

Thanks again to all of the Abigail supporters out there. Glad to have you in our lives!!

DISCHARGE PLANNED FOR TUES JULY 28TH

2009-07-25T08:55:00.012-05:00

We are on track to be going home on Tuesday,YEAH!! We are on day 40 of 43.

Abigail will be 110 days old on Tuesday... she will have spent 87 of those 110 days in the hospital and only 23 at home.

Sorry to not update the blog more frequently, but not too much to say. Things are going well. Abigail weighs 10 lb 5 oz as of this AM. She is still having difficulties eating well. One day is good, the next not so great. We gain weight, then we lose. WE get in trouble frequently for that. But I sure do try hard everyday to make her eat.

Health update: So this week... Abigail had a cardiac echo: results were fine. She had another doppler/ ultrasound of her blood clot. 3 months of lovenox shots twice a day and the blood clot is still there, no bigger, no smaller. So they plan to continue the Lovenox for another month and then re-evaluate. They say that sometimes the clots never go away.

We plan to go home on the Lovenox twice a day, Enalapril (blood pressure med) twice a day, Asprin once a day, Vitamin once a day, and Corn Oil ( yeah, gross like veggie oil, for extra calories) once a day.

Plan for next surgery: No specific day planned, they " think" it will be sometime around 5 or 6 months old. It just depends on her. We hope to get a little time at home.

Family report: I have gone back to work as much as I can, hard to juggle sitters, taking and picking up Jack, Nathan's work (Financial Advisor: for any of you people that NEED "life insurance, college savings plans or your kids, help with investments... he is only one phone call away!!)

Jackson is doing great. He has spent many nights and days with me at the hospital. He has done very well with our stay here. He thinks the hospital is the coolest place. He sure does love his baby sister. He is very caring. He is currently working on his potty training skills.

Thanks: I have to say thank you to everyone who has helped us so much! The people that have given their time to help with Jack, sit with Abigail, bring me food/ snacks/ dinner, provide me company at hospital, help around my house, gave donations, sent flowers, or just offered their help in whatever way we need. You know who you are, and I'll never forget these acts of kindness. I owe so many of you! Wouldn't be were we are now (especially with a smile on my face) if it wasn't for all of you AWESOME friends and family!! Thanks a million!!

June 29th

2009-06-29T16:42:00.005-05:00

We are at week 2 of our 6 wk stay.... I can't imagine 4 more weeks in this joint. The days are long and lonely. Visitors are welcome anytime (hint, hint). They are the highlights of my day. Abigail is doing good. Unfortunate that we are here only to receive antibiotics. She really isn't sick. They just want to make sure the "infection" is really gone this time. Not much really to say.... Jack spent the day with me and Abigail last friday. We played in the toy room, painted , rode cars, etc. We had a great day together. Me and Nathan attended a conference held by Its My Heart on congenital heart defects on Saturday. I'm just happy to say there i not much to report at this time.

Please pray for Abbey, Ben and their family. They lost their precious little girl, Emma, on Saturday June 27th.

6 week stay!

2009-06-19T14:07:00.004-05:00

Well, just got the news today that they intend on keeping her in the hospital for 6 weeks. They do not think she has endocarditis, but the treatment course will be the same. The 1st two cultures came back positive for enterococcus faecalis (same bacteria from previous hospital stay). They last 2 blood cultures are remaining negative at this point. They suspect that the infection has been hanging out either in her shunt (which is a foriegn object to body) or her blood clot. Both places would have difficulty getting rid of infection. They intend to keep her on IV antibiotics for 6 weeks, and long term oral antibiotics to keep it suppressed.
My heart sunk when I heard this news. Hate living life out of a suitcase and trying to manage time with both kids and husband. And most of all, them just messing with her all the time. They plan to place a PICC line on Monday.
Overall she is doing great, eating well, gaining weight, and looking cute!!

Not going to be a short, quick stay!

2009-06-17T12:16:00.006-05:00

As you can see, baby Abigail doesn't look sick at all.

Today during rounds with the doctors:
*2nd blood culture came back positive again (some sort of infection in blood)
* no change in the blood clot

Impression: possible infection (endocarditis) of the heart or infection in her blood clot or just in blood in general

Plan: antibiotics for 10-14 days. If they come to the conclusion that the infection is in heart or clot they will do six weeks of antibiotics. Repeat blood cultures everyday until negative.

Summary for the day:
She got a successful IV( for antibiotics) today started in interventional radiology on the first try!! Woo Hoo!! Hopefully it lasts. Once blood cultures negative, possibly place another PICC line.
She had an echocardiogram of the heart to look for signs of endocarditis. They did not see any signs, but they say it doesn't always show up. Not sure how they will be able to come up with a definte diagnosis. They finally got the Lovenox level they have been trying to get for weeks now. The level was low (non-therapeutic) . So now they will increase her dose. They are pleased that there is no growth of clot. Will remain a 3 month treatment. ( Her poor legs and arms are already bruised, with knots). She is on three high dose antibiotics, lovenox, baby asprin, and enalapril). She continues to eat well, and you would ever know that there are germs setting up house in her little body.

Well, that is it for now..... start your prayers back up!! We enjoyed being at home much better.
Brother Jackson is sick too... tested positive for strep throat. Possible source of her infection

Back to TCH!

2009-06-16T17:22:00.006-05:00

Well, not excited to writing about our new stay at Texas Children's Hospital!!Yesterday we went to our regular pediatrician appt for hr 2 month shots. Abigail weighs 9 lbs. 2 oz. and 21 in. long. They took her temperature on forehead- 100.6. Bad mother that I am, I hadn't noticed. So not shots for us yesterday. The pedi notified the cardiologist. We were instructed to go to TCH- ER. All because of a low grade temp.

While we spent 8 hours in the ER, we had blood cultures drawn, CBC, chem 7, chest x-ray, EKG, flu test, and to top things off a spinal tap! Her white blood cell count was elevated (23, a sign of infection). Flu test negative, spinal tap negative for meningitis. About 12am last night we were transferred to the cardiology floor to hopefully just stay overnight.

So update from today.... 24 hours has turned into 72 or more hours!! Lucky us!! No fever since she was admitted. Blood cultures initially have come back positive which equals need for IV and antibiotics. They say the sample could possibly be contaminated, so they drew another sample today. We had 5 different tries today for an IV by " the best", " the experts", " the people who never miss".... NONE were successful, surprise!!! So after many discussions, they have decided to give her antibiotic orally. She went for another ultrasound of her blood clot... still waiting to hear any results. So for now thats it. Just hard to be the one to watch her go through this torture all over again. Lets hope this stay is much shorter than the last.

Brother Jackson at home today also with a fever. So maybe we are just dealing with a little virus. Need my kids to be healthy!!

I am planning my return to work on July 5th!! Exciting huh?!?! Any takers on babysitters, need a little baby love, got the baby fever and your husband not willing?? Just going to be working once during the week and one day on the weekend.

I will keep you all updated!!

Doing GREAT at home!

2009-06-01T17:16:00.006-05:00

Abigail is weighing in at 8 lbs. 10 oz. now!! Eating and growing well. We have had no problems since we have been home. Thank the Lord! We have had many doctors appts in last two weeks. Cardiology last Friday. They did an echo cardiogram of heart (GOOD), EKG (GOOD), chest x-ray (GOOD), blood pressures (GOOD). Her oxygen saturation's have been within the normal range for her.We return for another visit on Friday. We had Hematology appt on Friday also, with the intent of drawing blood for a Lovenox level. Not surprising that they only tortured her not to get their sample. (Remember, they had difficult time while in the hospital drawing blood). We returned today for them to try again. Tried twice, unsuccessful. Plan to try again on Friday. It makes me so angry to watch them hurt her over and over. We went to Audiologist today to re-check her hearing test. She had failed the test in the left ear previously. Today we passed in both ears, YEAH!! These doc appts keeping me busy!

Abigail is a good sleeper during the night. She is letting me sleep 4-6 hours at a time. This is great because in the hospital they made us wake her up every 3 hours regardless to feed.

Big Brother, Jackson, is doing awesome!! Has had no problems with the new addition to our home. He is actually great with her, very caring, and very helpful. He talks about how her heart was fixed, asks if she's okay. Randomly goes up to her and talks to her, pats her head, tells her he loves her, gives her her pacifier. It's so sweet!

So overall, things are great in the Rorick household. Sorry its been so long since an update.... but, not too much to say lately since she doing so well. Her next surgery date is still undetermined. They say typically between age 3 mon- 6mon, but sometimes up to 9 mon. Just depends on how she does in the weeks and months coming up.